Christmas Day 2009

Abraham's shunt is not functioning properly so he might need a new shunt surgically placed. He has a CT scan on New Years Eve and sees neurosurgery. His last CT scan last week did not look very good however he clinically looks great. He is breastfeeding/bottle feeding, eating solids including many different types of food. His diaper rash is clearing up however we are still using dispoable diapers since the diaper cream effects how well the cloth diapers absorb. For Christmas he got some toys, clothes and musical stocking (from Grandma), a musical toy. Mommy got a jogging stroller however his OT is not sure it will work well for him. He slumps over in it. We also got an ice cream maker for our Kitchen Aid mixer. We plan to eat more natural healthy foods. If we make our own ice cream we know what is in it. Also I am learning how to make my own baby food. I figured that I would just post the Christmas letter here:
Dear Friends and Family,

Wow what a year. A few words to describe: major changes and a test of faith. However we all pulled through it thanks to God?s faithfulness plus the love and support of those around us, both near and far.

In January we moved from San Diego back to Washington. We are so thankful for the friends that made the trip with us. Only 12 days after moving Karen went into premature labor at 26 weeks gestation. Within two hours of arriving at the Naval Hospital she was told that it was too late to stop the labor and that she was too unstable for transport to Madigan (hospital with NICU). After he was delivered a true knot was found in his umbilical cord, which would have caused him to be stillborn. Thankfully Karen recovered quickly from the c-section. Abraham Robert Goddard was born at on 2/2/09, weighing 2.2 pounds and 15 inches long. With his life hanging by a thread he was flown by helicopter to Madigan NICU. His original due date was May 5, 2009. So he is truly as miracle baby.

Abraham had a complicated NICU experience. Karen finally got to hold him for the first time 14 days after he was born. Despite having many chronic conditions, including cerebral palsy, hydrocephalus, vision problems and chronic lung disease (all result of premature birth) he can drink milk, eat solids orally, say momma/dada, smile, and laugh and is working on rolling and vision. We are hoping that he can wean from the oxygen and monitor. His VP shunt is not functioning properly so he may have to start 2010 with another surgery.

Glenn returned to work in March. He is on a submarine tender. He spends his free time, remolding the house, Men?s Bible studies and playing WII. He will be going to Mississippi for school in February 2010. Then he will return for a short time before he deploys to Diego Garcia.

Karen made the transition from working as an RN to a stay at home mother of a premature baby. She spends her time taking Abraham to medical appointments, attending Bible studies, lactation collation teas and walking with friends. She is looking forward to respite care so she can unpack the house the scrapbook again. Also she plans to do more with her Mary Kay business and improve her homemaking skills.

We are planning for 2010 to be uneventful other than reports of Abraham developing skills beyond what was expected of him.

In Christ Love,

Glenn, Karen and Abraham

Quick post

Abe has been home for a little over a week. Happy, smiling and eating some solids again. He gained a pound while he was sick and it getting NG tube feeds for 3 and 6 AM. Occasionally midnight too however he is usually awake any time between 12:30 and 2:00AM. He some times does oral feeds for 3AM however he is usually snoring at this time. Mommy is awake because her alarm goes off every 3 hours to feed baby. His diaper rash got worse, most likely progressed to a yeast type diaper rash. His doctor called in triple diaper mix and it took a couple of days but his bum is still on the mend. Hopefully he won't need formula or antibiotics again. These both contributed to the diarrhea and skin break down and diaper rash. We are using some of the frozen milk since he requires 32 oz daily. Hopefully my supply will increase however it is tiresome to keep pumping. It's been 10 and 1/2 month. He sometimes even eats more too. Plus he is eating avocado, whole milk yogurt (healthy bacteria to help with the yeast diaper rash), pears and rice cereal. His VP shunt had to be reset last week, draining too quickly again. Plus CT scan showed CSF (cerebral spinal fluid) in areas where you typically would not see it. He sees neurosurgery again on the 17th. If the body has not reabsorbed the fluid then he might need surgical intervention. I really don't want his head to surgically tapped into again however it might be necessary. Given his age and risk factors I doubt it would be an outpatient procedure therefore he would be admitted again. Please pray that he stays healthy, that Glenn and I stay healthy and that his VP shunt works properly so that he does not require more surgery. Glenn will be leaving in February for school so please also pray that we get more done at our home before he leaves. We had some issues with both vehicles There is NICU Christmas party at Madigan (Army Hospital where he was air lifted to) this weekend. We are looking forward to seeing the nurses, doctors, ect that took care of him when he was so fragile and ill. He is a 16 pounder now so not a fragile.

Still In-patient

New pics. Abe is doing better but is still on medical unit at Children's. He is on 0.3 liters of oxygen.
When he can tolerate 0.1 liters and show no signs of infection he can be discharged home. His lungs sound clear to the nurses and doctors. This admission has been stressful. He went from all oral feeds either bottle or breast to continous NG tube feeds. He is getting 32 oz daily. My breast milk supply went so low that he required formula. This is difficult for me since it is the one thing with my child that I have control over. He was given 12 hours of Simulac Advance with my permission. We had no other choice since the frozen milk exceeds the hospital standards. The attending doctor recommed Domperidone which is from Canada. I know some women from LLL meeting that have taken it. I am going to inquire about any side effects or adverse reactions. The doctor also mentioned donor milk however I don't feel comfortable with this. Abe had foul smelling diarrhea with Simulac so if he needs formula again then Nutrimagen will be used. The plan is to decrease oxygen by 0.1 every 12 hours. He might go home Monday. Well he just fell asleep so when I finish pumping nap time for mommy too. We hope he is better for the Christmas party for former NICU families at Madigan. It would be a nice for them to see how cute he is and not a sick, fragile baby on deaths door. His smile is so cute but I am his mother.

11-23-09

I am typing from phone fo please bear with me. Abe's chest x-ray looked worse on Sunday however the doctors said that it is common for it to not show up right away. He is still in strict isolation. I had vomiting on Saturday night so I had to leave him very unstable. I drank a Sweet Leaf Mint and Honey tea that I got at the hospital. It did not taste right but I drank it. I contacted them and they are going to contact distributor. Could have been an issue with proper lid seal. I got better quickly, that night. I had planned to stick around the hospital until he improved. He is improving however he was requiring 1.5 liter of oxygen, at home he is on 0.1. When I left tonight he was on 1 liter. I wanted the nurses to lower him to half a liter however they did not want to do it while he was sleeping. He is not working as hard to breath but still too much to go home. Also he is in pain. He did play with his toys tonight a little and he made baby noises and smiled. He is on continous ng tube feeds and might go home like that. I am going to ask about changing his antibiotic to oral since he won't go home on iv antibiotics. Also his oxygen requirement needs to be less. He is getting CPT from respiratory. This helps break up the mucus on the lungs. Oh he has right lower lobe pnemonia. He will remain in isolation until the the viral screen is confirmed. He has had some wonderful nurses. I have been too stressed and tired to really help in his care other than pumping the breast milk. I am going to sleep while Glenn waits for the laundry to finish. I have had to wash clothes daily since I only have two shirts and two pants. I am going to give a friend a set of keys to the house and have a "just in case bag packed" Thanks for the support. He is a little fighter. We will post more pics

Increased oxygen need

New pictures will be available soon. Abe is not spiking fevers any longer, his heart rate and respiratory rate are closer to his normal however he is having episodes of low oxygen saturations. His oxygen was increased from 0.1 to 1 liter. The higher need for oxygen is related to his NG tube feeds and the infection. His left foot was red, hot and swollen. This is the same foot where his blood was drawn. There was potential for a blood clot in his foot however the doctors don't feel that is an issue since his foot is better. When he was desating I thought, "oh no he has a pulmonary emboli (blood clot that travels to the lungs and causes respiratory distress" This was ruled out and more common in adults than infants. The blood cultures that were drawn at Naval Hospital were positive for gram positive rod (e-coli is a gram positive rod) however Children's repeated the culture since it was a heel stick and not a peripheral stick (blood from the veins). He is on a broad spectrum antibiotic so it will be effective against gram + or gram - bacteria. The fact he does not have a fever I would say that the medications are working. His IV went bad so the nurse had to re-start a new one. Thankfully she got it with one stick. He is acting a little more like himself however he still won't show me his dimple, not smiling. Still don't know when he will be discharged home however I doubt it will be before Monday or Tuesday. He is not tolerating NG tube feeds, has low oxygen with it, so he is getting a little breast milk via NG tube, 40 cc/hour. Discharge criteria would: fevers stable, no increased oxygen demand, tolerating NG tube feeds and breathing easily. He is in isolation so it is not recommended for us to have visitors. It will take him some time to recover after he is discharged so we will probably take a break from bible study, MOPS and church.

11/20/09

Abraham is doing a little better. He even put his right hand over his IV. We had to cover it with a sock so he does not pull it out.I put his crinkle book, he loves toys that make the crinkle noise, near him and he started to play with it a little. Then he fell asleep. He has not had a fever since early today. His cheeks are not flush and he is more alert and awake. He is still receiving IV fluids and was started on NG tube feeds at noon today. He will get 4 oz every 3 hours day and night. He is not strong enough to eat orally right now. He is still working really hard to breath and his oxygen saturations are lower. They are going to check with the doctors if he needs his oxygen flow increased. He is still on 0.1 liter (same as home). At home he does decrease to 87-88% however usually without oxygen. He has been holding his legs in the frog position, which could be a neurological sign. Neurosurgery feels that he does not have a VP shunt infection however they are also monitoring him while in-patient. He has a follow up CT scan and appointment scheduled the first week of December. Not sure if I posted this here or on face book however he also has pneumonia. We are not sure when he will be discharged home. However his fevers, respiratory status and nutrition/hydration would all need to be under control. He probably will need NG feeds at home.

Flu

Abe came back postive for influzena type A, most likely H1N1. He was given a dose of antibiotic and started on Tamiflu. He is not doing well with taking his medications orally. He might require NG tube for medications and for feedings. We are going to try the Tamiflu in a small amount of breast milk. He is still working very hard to breath however is looking better and acting more like himself. He has fight in him (good thing for such a sick baby). He is not really wanting to be held and wants to sleep. Not sure where he picked up the flu but interesting that he had dose number 2 of the seasonal flu the day prior to getting punky on us. The flu shot is not a live virus so we think he probably already contracted it before Tuesday. He was a little clingy and fussy Monday night. Please continue to pray that his fever will break and his work of breathing will lessen so he can eat and get the antibodies the breastmilk will provide. I am not sure if Glenn and I will need Tamiflu.

Not well

Abe had his second seasonal flu vaccination on Tuesday and Wednesday morning he had a cough. We went to his scheduled appointments then headed back to Bremerton only to miss the 5:30 PM ferry. Had to wait until 6:45 pm and the heat in the Jeep is not working. Abraham was not taking in very much fluids however he could not eat for 3 hours prior to abdominal ultrasound. He took in only 8 oz since midnight so when we got to Bremerton we called pediatrician on-call. (He also had dry lips, flushed checks, fever of 101.1 and decreased urine output). We took him to Bremerton Naval Hosptial where he had blood cultures, IV fluids, chest x-ray, VP shunt series (x-ray that looks at his shunt). He was then transfered to Children's via ambulance. I would have just taken him to the ER when we were in Seattle however I am not sure if Tricare would have allowed this. It would have saved us huge travel time. By the time Abe and I arrived at Children's he was working hard to breath, although maintained his oxygen saturations without increased oxygen requirement. They are not sure what is wrong with him but he is being worked up for RSV, H1N1 and other cold/flu viruses or bacterial infections. His second chest x-ray really was inclusive of pnemonia however his clinical picture shows possible evidence. He can't eat right now however is getting IV fluids. CT scan in the middle of the night showed that his shunt was draining too much CSF so neurosurgery NP, UW grad, :-), reset it to drain slower. He still has fevers, flush checks, working hard to breath and is full of gas. So anti-virals or anti-microbial agents have been started. His heart rate is very high and respiratory rate however he is maintaining his oxygen saturations on 0.1 liters of oxygen (what he uses at home). He is not very interactive, appears to be in pain if moved and just wants to sleep. Neurological causes are also being ruled out. We are not sure when he will be discharged however please pray that he will return to his spunky self. He won't even smile to show me his dimple. He gave me sad lips when I asked him to show it me. His urine output has increased. Glenn is sleeping right now. Abe is in strict contact isolation so I don't think we can have visitors. Glenn and I are healthy. The nurse had to wear a special mask when collecting his nasal swab (test for viruses like H1N1). I am headed back to his room now. We might not make it on Sunday for the baby shower. Depends on his status, if we go home and also if it recommended for him to be around other children and people. He looks like a very sick baby in his crib here at Childrens. Thanks for prayers.

New news

New pictures will be available soon. I have some really cute ones. What do I start with first, the good news or the bad news? I guess I will start with the bad news then the good news. Abraham was diagnosed with cerebral palsy. The neurologist based the diagnosis on the MRI that he had in August, his motor development, he is behind his peers at his adjusted/corrected age of 6 months, and the history of brain insult. Amazingly I did not cry until I was driving to the ferry to go back home. Glenn had duty (works all day and all night, for those non-military types) so he received the news by a text message then a phone conversation. I was told all a long that there was a strong possibly of CP. If you don?t know what CP is please see this website: http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm. We don?t know what degree he will be affected since there is a wide range. One of the clerks at Childrens has CP however she is smart, walks without any assistance devices and speaks and hears well. She has worked there for over 24 years and is very helpful to us. She always remembers us when we are there and says hi. Abe?s CP might not be as mild but the good news: HE IS NOT GOING TO BE A VEGETABLE! He moves all of his extremities still however he is stronger on the left side. His head and trunk control has improved and if the speech therapist approves it he will be moving on to solids. He smiles socially and loves to play with toys that make noise. He tracks with his eyes however not a well as his peers. He might need glasses. He sees eye doctor in November. He says, ?Mama, mama, mama?. I try to get it on video but it is difficult to get the voice and he in the picture. Glenn got me a microphone for the computer. Maybe I could just record it and post it somehow. We got the microphone so that we could record ourselves reading to him while we do the dishes or clean. He seems to enjoy noise. Nutrition: he is gaining weight without feeding tube, however he has good days and bad days so we might have to use it again, he was 15 pounds 7 oz. the GI doctor is suggesting adding a carbohydrate substance to the breast milk for increased calories and has ordered an upper GI series to rule out structural abnormalities that might contribute to the GERD. He has projectile reflux once a day. Respiratory: still on oxygen, we see occasional low oxygen however we are trying to see how he does without it. He sees pulmonary next month. We are hoping to lose all the medical equipment. Some advice I have for parents out there, never take your child no matter his/her age for granted because you never know what might happen at any time. There are babies still in the hospital that were there when Abe was there. I think his former NICU room mate is still on the medical unit. I have not seen him or his mother since August. I am going to check on her next time we go however with the flu season here I don?t think it would be a good idea to take Abe to the unit where children are on ventilators. He is around other children at church and MOPS. Some never have been home; some went home for a little while then were re-admitted. I also met some families that have a ?normal kid? that are diagnosed with cancer or other chronic illnesses. It changes your life however I think I can handle a child with CP. I don?t know if I would have the patience to deal with autism however. So God gave me what I could handle. The road won?t be easy but it is what it is. I can?t put him back inside and make him perfect in the worlds? eyes. He is perfect in God?s eyes. On a different note: Glenn might be going to another state for school for 3 months then will be deployed for 1 year. This makes me a little nervous since someone tried to break in to the house last week while we were at the doctor?s office. The front door lock was broken but nothing other than a small package of medical supplies that we never received was taken. For those concerned about the flu, a friend sent me this on face book: Dr. Vinay Goyal is an MBBS,DRM,DNB (Intensivist and Thyroid specialist) having clinical experience of over 20 years. He has worked in institutions like Hinduja Hospital , Bombay Hospital , Saifee Hospital , Tata Memorial etc.. Presently, he is heading our Nuclear Medicine Department and Thyroid clinic at Riddhivinayak Cardiac and Critical Centre, Malad (W).

The following message given by him, I feel makes a lot of sense and is important for all to know.

The only portals of entry are the nostrils and mouth/throat. In a global epidemic of this nature, it's almost impossible to avoid coming into contact with H1N1 in spite of all precautions. Contact with H1N1 is not so much of a problem as proliferation is.

While you are still healthy and not showing any symptoms of H1N1 infection, in order to prevent proliferation, aggravation of symptoms and development of secondary infections, some very simple steps, not fully highlighted in most official communications, can be practiced (instead of focusing on how to stock N95 or Tamiflu):

1. Frequent hand-washing (well highlighted in all official communications).

2. "Hands-off-the-face" approach. Resist all temptations to touch any part of face (unless you want to eat, bathe or slap).

3. *Gargle twice a day with warm salt water (use Listerine if you don't trust salt). *H1N1 takes 2-3 days after initial infection in the throat/ nasal cavity to proliferate and show characteristic symptoms. Simple gargling prevents proliferation. In a way, gargling with salt water has the same effect on a healthy individual that Tamiflu has on an infected one. Don't underestimate this simple, inexpensive and powerful preventative method.

4. Similar to 3 above, *clean your nostrils at least once every day with warm salt water. *Not everybody may be good at Jala Neti or Sutra Neti (very good Yoga asanas to clean nasal cavities), but *blowing the nose hard once a day and swabbing both nostrils with cotton buds dipped in warm salt water is very effective in bringing down viral population.*


5. *Boost your natural immunity with foods that are rich in Vitamin C (Amla and other citrus fruits). *If you have to supplement with Vitamin C tablets, make sure that it also has Zinc to boost absorption.

6. *Drink as much of warm liquids (tea, coffee, etc) as you can. *Drinking warm liquids has the same effect as gargling, but in the reverse direction. They wash off proliferating viruses from the throat into the stomach where they cannot survive, proliferate or do any harm.



Stay healthy all...

10/11/09 (2nd attempt, first one did not save)

Abe gained 1 pound in 2 weeks. He is 14 pounds 12 oz now. He reached a point where he wanted to eat without use of the appetite stimulate so I discontinued it. Also he was not really using the feeding tube. Wednesday night when it came out I left it out. He is wanting to eat 7 or more times daily. Plan to call his on Tuesday to confirm decision. She is a great doctor. She verbalized that the parents know what is best for their child(ren). He has CT scan this week and sees neurosurgeon. Please pray that the CT scan shows improvement that will amaze the neurosurgeon and the resident or fellow that is working with him. (If this is God's will). We think he had a virus that caused him to have decreased appetite, ect. We are trying to normalize our life by going to a MOPS (mother's of preschoolers group), Tuesday morning Bible study, monthly lactation lunches, Saturday night church, Sunday school class, WII fit plus (did Yoga the other day and I am still sore) and playing games with friends. Abe is smiling more and more aware of his surroundings. His GERD is causing him problems. Dad fed him, laid him in his bed, then dad fell asleep. Not even 5 mins laters Abe desated (low oxygen), was coughing then crying so I restarted him back on his prevacid. We tried Zantac however it taste bad. Please also pray for breast milk production. I am still pumping, 8 1/2 months now, and my supply has gone way down. I am using some of the frozen, more room for food in deep freezer. I want to keep him on breast milk to protect him during cold/flu season. I read that Yoga can increase milk supply by increasing circulation to the milk ducts. The day after I did Yoga my supply did increase. However I don't think Yoga is the only reason for that. I am also learning to make the transition from professional, working women to stay at home wife and mom. I have learned some useful steps now I just need to put them into action. Before grad school I worked 6 jobs to pay off debt. My condo was a mess but I was able to move to WA, get a masters degree in nursing, make new friends and get my MRS. degree too. I should get back to dinner, already messed up the spaghetti noddles once tonight.

Is it time to Eat?

Abraham is doing better. He still has the NG tube in however has only required 1 to 2 feeds that way. also he seems to have ab appetite without the use of the Periactin. he is still spitting up however less than last week. He is constantly wanting to eat and is taking less time to eat. Thanks for the prayers. He appeared to have a virus and is better now. I am nervous with the RSV season coming but he will get immunized to protect from this. This vaccination is reserved for premature babies or infants with chronic conditions like heart problems. RSV is basically a cold. A baby could be hospitalized for this because babies are not able to cough up the thick mucus. I had this my first year working at Phoenix Children's as a nurses aide. i was super sick but did not require what an infant would. I floated to all the units then and in the winter I spent most of my time on the RSV unit. abe covered his face with a blanket this morning since we got up early for Bible study. I will have Glenn post it later. it is very cute

Quality of Life

Abraham saw Gi doctor on Friday. The doctor felt that he is well nourished and if he gets too many fat rolls on him then that is not healthy either. His recommendation was to keep NG tube in until after winter months due to RSV season. Also to give Periactin twice daily and encourage oral feeds. Abraham has had a runny nose and cough. Is he not wanting to eat because he does not feel good or because the more mature portions of the brain would be taking over such as suck/swallow, ect at this point in time. If he gets to a point where he needs a G-tube (surgically implanted tube that feeds directly into the stomach) and is a complete vegetable I question why would keep going. He is responsive to sound/touch and is interactive at times however will this also become just a memory. If he won't have any quality of life then I question why spend all the energy and effort for him to stay here on earth. At least in heaven he would his quality of life would be much better. We are not at this point yet however in May 2010 we will have a better idea.May 2010 will be when he will be 12 months corrected age, 15 months actual. No medical professional is pushing us this way as they "see many kids with G-tubes" "many kids/people with different qualities of life". It becomes the normal when you work in that environment however in the community this is not the normal. I have meet former premature babies that walk, talk and play and have a good quality of life. If my son is dependent on diapers and artificial force feeding and not interactive with his world for the rest of his life, which might be 80 plus years, then why continue with all the procedures and interventions. We are not at this point yet however there is potential that we will be faced with such a decision.

Update on eating

Abe is still not eating very much. He lost a little bit of weight however the xray to check the shunt only showed a belly full of gas. It is difficult to determine with him if this is neurological sign: shunt failure or a virus. I noticed a runny nose, sneezing, foul smelling gas and stool. He was very fussy during home visit with OT so she had to leave. he is better now. I think it is a virus because he wants to be held or in his bed. He feels warm but I don't show evidence of a fever. I know that fevers don't also occur. His doctor is going to call me today. She called the neurologist at Children's to discuss her findings from the exam yestersday. I really don't want to add formula in if it is something that will pass. If he is not eating well I don't see how adding this to the mix will make a difference

Still not eating

In the last 12 hours he has not even finished one 4 oz bottle. He did breast feed at midnight however I don't think he got that much. He sees his doctor today at 1:45. I have been trying to figure out why he won't eat: is it infection, shunt failure or that he has reached an age where a different, higher functioning, portion of the brain would be responsible for hunger messages to be sent. What if he is tube feeding dependent. I question the quality of life if he will always require to be artificially feed for the rest of his life. He is responsive however is not meeting mile stones that other babies his corrected age, 4 months, are. I am also questioning why me, billions of women get pregnant, have healthy babies without any complications. Why were we selected to put through this? About a month ago I heard on the news that a 2 month old baby was found dead a few miles from the home. The mother was in jail. That child was not even given a chance. I am trying to live a normal life, clean the house, go to church, attend social functions, it just is difficult to go any where if he is not eating. I took some friends to the airport early today and would have been able to make it the women's bible study however I chose to stay home since he will eat better with limited distractions. I could not even get him to finish the bottle. What else can I do? I can't force him to eat if he won't (unless the NG tube goes back in). I am going to try to feed him again since he is waking up again.

Nutrition

abe is not wanting to eat. i am not sure what is going on. he might be getting a tooth in. if he lost weight or did not gain then formula will be added and a medication to stimulate his appetite. i really dont want either. i have stressed myself out trying to get him to eat. i am so tired of pumping.some women r lucky enough to only have to pump a few times. i have been pumping 5 to 8 times daily for over 7 months. it makes it difficult to have a normal life. going to church some times is even overwhelming. i would stop but it is the best thing for him and i have fought tooth and nail for him to be only on breast milk. majorioty of NICU mothers stop pumping/ breastfeeding long before now. please pray that abe will continue to grow and thrive on the breast milk and that i will have the endurance to keep pumping or trying to get him to breastfeed. he is refusing to eat either by bottle or nursing. neurosurgery did not feel this was a shunt failure sign. increased intracranial pressure can cause poor oral intake. he is other wise happy with some periods of fussiness. i am typing this from my phone so it may be poorly written also it is very late.

Finally new pictures

Abraham is still NG tube free. His weight was only up a little, 13 lbs 12 oz to 13 lbs 14 oz. However he had his immunizations last week so his appetite was decreased for 3 days.Although his weight gain is not much at least he is not losing weight. He usually does not want to eat at midnight or 3 AM. It varies from day to day thou. He wakes me up around 4AM to eat. He still has reflux but is less since the NG tube has been out. The GI doctor suggested taking out the Zantac since he is not wanting to take it. If the reflux continues and causing desats (low oxygen) then he will have a Ph probe study. If his appetite continues to be down then he will be put on an appetite stimulate. I feel that his appetite was down from the immunizations and not because of something that requires medical intervention. We are working on breastfeeding however it is difficult when you have a medical community that is pushing using a bottle since you can visually see what the baby is drinking.I did pick up a supplementer nursing system (alternative to bottles)(attaches to the breast with a bottle attached. This will allow him to breastfeed and we can see visually what he takes from the bottle attached. He is getting hungry now. Please pray that he will continue to grow well without the NG tube. He is almost 7 x his birth weight but needs to continue in the right direction. The growth chart shows that he went straight up.

No more tube feeds

Abraham's NG tube came out on his way to the doctor on Friday. I decided that since he has been taking mostly oral feeds either by bottle or breastfeeding that I would give it a try without. Also the last time I put it back in the hated it and it broke my heart to see him suffer through it again. It is uncomfortable to be put in however not as painful as other things that he has had done to him. I did not have official doctor's orders however today the Speech therapist,occupational therapist, pulmonary doctor and dietitian all agreed for a trial. Sadly they are recommending mostly bottle feeding since it can be measured. When we met with the OT/lactation consultant today, he was fussy we thought he wanted to eat however he wanted to sleep. The breastfeeding he did in during that appointment is not as effective as I have seen him do at home. The goal is for him to eat 7 x daily 4 oz. If he does not gain weight or loses weight in 2 weeks then we will do a trial of waking him up at 3AM for an 8Th feed. If that is not effective then the plan is to add Neosure to the breast milk. If this still does not work then the NG tube will need to be put back down and used again. I really don't want to use formula in fact the first ingredient is non-fat milk the second is corn syrup solids. Also one can is $16.00. I could use this money to buy him more toys to play with. This sure beats NG tube feeds which the all the professional feel he would be best without. There was also a change with his oxygen requirements. Since I did a trial run of 7 hours without oxygen a month ago and he did fine other than a few desats (low oxygen) while feeding his doctor has decided that he only needs oxygen while sleeping and eating. His o2 sats must be higher than 94%. If he drops below and comes right back up then he can stay off the oxygen. If he stays below for more than 5 minutes then he will need to be put back on. He will require consist monitoring again. He is going to have a echo cardiogram in 3 months to ensure that his heart is functioning well then a complete oxygen wean might occur. I really wanted him off the oxygen and thought that he would out grow that need before the tube feedings were done. However the NG tube is more invasive than the oxygen so I can accept this. He is moving in the right direction now he just needs to prove that he can grow on straight breast milk without the NG tube. Development: when I put him in his swing he reached for the toys on the tray without encouragment. The NP today felt that he is coo appropriately however has some asymetrical movements. On a side note his former NICU room mate, Yair is 10 pounds now and is out of NICU. He looks really good. He is still in the hospital however is closer to going home. His mother is far away from home I think around 3 hours and has another school aged son. If I figure out how to post pictures that I took recently I will.

Grandma visits

My grandma is here from Arizona. She thinks it is so cold here. I think mommy and I might a mild cold. We are both sneezing and mommy has a sore throat. I am recovering well from my surgery. Mommy still keeps a bandage over my head however my incision might be healed enough now for it to be removed. My monitor drives my grandma crazy because it alarms. I am doing fine but sometimes my sensor is not on my toe very well because I wiggle a lot. The home OT noticed that my right thumb was tight so she might make me a splint for it. Mommy is looking into some non-toxic therapeutic toys for me. Ones not made in China. It seems like all baby stuff is made in China or made out of all natural latex which mommy is allergic to. The home therapy people let me play with Christmas tinsel (with direct supervision). It is shiny and I like it however mommy feels that it is not safe for me or the cats. Also other babies play with it to. They wash it with bleach water but mommy still does not like it. She wants me to learn and develop but is a major germ a phobic. They are working on my hand/eye coordination. My doctor called Mommy yesterday I might get to switch to demand feeding (meaning I only have to eat when I am hungry) verses every 3hours day and night. Maybe mommy will get more sleep or worry that I am not getting enough and sleep at all. I know she won't let me go without eating trust me. Last week I 13 pounds 8 oz. I wonder how big I am this week. Mommy still puts me in newborn size but it's a tight fit. I think she is going to pack them away now. I am a big boy and want to wear big boy clothes. I have 2 hats that I can wear to cover my incision. Well I think mommy wants to try to take a nap now. My mommy has some new pictures she just needs to figure out how to upload.

Homebound

We r driving Abraham home now. He did well however he vomited with oral feeds, his body is swollen from surgery and he has some bad gas. eariler today we were concerned about urine output however he is fine now. he even pooped a few times. Dad left those diapers for mommy. Thanks dadaddy. he is sleeping in his carseat. A friend of mine since 1st grade was in town. we went to dinner in seattle. i wanted to be close to the hospital in case anything came up with him. he is doing great right now. thanks for all the prayers. his pain is under control however i am going to give him tylenol around the clock. thanks again for all the support given to us

Surgery recovery

abe did fine in surgery. he is on a little more oxygen but the plan is to wean him back down to 0.1 liters.i am learning to do this on my phone so some letters might not be capitized. he tried to drink some milk from a bottle however he is in pain. You can see the tube from the shunt under his skin. also he had scatch marks on him in a pattern. I asked what happened apparently neurosurgery staples the surgical sheets to the patients. I am not sure how to hold him to burp him since he also has a abdominal incision. It breaks my heart to see him in pain. if he does well then he will go home thursday. however i am nervous for him to seat in his carseat. i dont want him to hurt. the pain medication seems to be working.

Surgery 8/5/09

His pre-op appointments are tomorrow morning and his surgery will be Wednesday. We don't have the exact time yet. The OR is booked but the surgeon is trying to figure something out or at least have other people in his office figure it out. We will be staying at the VA Fisher House since his surgery might be at 6AM the next day. The anticipated length of stay is 2 days. Please pray that everything goes smoothly and that Abe does not have any set backs and recovers quickly. He won't be able to eat anything after a certain time frame which is going to be difficult or him. He likes to eat : -).

Still waiting

I called to schedule his surgery today and the lady that is filling in today had no idea that it needed to be clarified with the surgeon. It was supposed to be discussed at the staff meeting. He is in surgery all day now. Having been a prior adult and pediatric surgical nurse I know you don't page a surgeon during surgery unless it is urgent. Although pediatric surgeons are usually a little more receptive. Those in the medical profession will agree that surgeons a breed of their own. However God made them to help people and thankfully they can provide this drain to decrease the pressure on Abe's head. A scheduling issue is not urgent. It sounds like the OR is pretty booked this week. She tried to schedule the pre-op and anesthesia visit and they were pretty full too. She is going to call me back in the morning. This is a bit frustrating however at least this time around we can prepare. The night that we drove the the Navy Hospital I had no idea that I would be delivering a premature baby. On Saturday Abe was not sucking on a bottle or binky too well. I debated calling the neurosurgeon however he just had a CT scan a few days ago so there is probably nothing they could have done at that time. He is better now. If he did not have an NG tube then I would have taken him to the ER since he would not have been able to eat. Poor oral intake is a sign of increased intracranial pressure. He did finally suck on his binky that night then fell asleep. Maybe he just was not interested when I tried to give it him. I guess I will never know if it was a true neuro sign or just a baby not interested. Maybe a stomach ache. He is back to his self now.

Surgical Update

I called the surgical scheduler today and she said to call back on Monday. This is causing some stress. I don't want to find out Monday that his pre-0p appointment is Tuesday morning and surgery Wednesday. Since they deal with all the time I don't understand why they could not set it up yesterday when we there. We were there for several hours. On a positive note at least this time around we can prepare. When I went into preterm labor I had no idea that Abraham would be born and we would deal with hospital life for 3 1/2 months. The scheduler told me 2 night stay. This is different than what the doctor told me. Please pray for no complications or developmental set back. He has came a long way but we still have an uphill battle to fight. He has came a long way Also the hospital has AC so during hot weather would be a good time. I really, really, really don't want him to have the surgery at all however I have no choice. Eventually it could be life threatening to not have it. Right now his fontanels, soft spots, are open so this allows for increased volume of cerebral spinal fluid. The neurosurgeon that said that if any adult had the size ventricles Abe has that he or she would be in a coma. We are not bringing Abe to church this week or for a while after surgery. I don't want to risk infection especially since one incision will be directly into the brain and one in the abdomen. Just when we start becoming more social and feel somewhat normalized he needs this procedure. We finally were able to schedule with the GI clinic after a month of calling and being told "we don't have any clinical or a referral". I got a letter from Tricare with authorization June 25th. Thankfully a Tricare case manger and the Naval peds clinic discovered that the referral got lost in the documentation. The earliest appt is August 28th. I am concerned that they will refer for surgery for a G-tube placement. I really don't want him to have this. I am starting to question his quality of life now. Right now he is responsive to outside stimuli however will this remain or will he become a "vegetable" and have no quality of life.

7/30/09

Well Abe had the CT scan today. His ventricles in his brain have increased in size and unfortunately the neurosurgeon would like to put in a VP shunt (drain that goes from his brain to his abdomen) next week. I am not sure about the day yet. The neurology nurse practitioner said that neurosurgery does their surgeries on Thursdays and Fridays. We would have to come for a pre-op appointment then surgery the next day. I am hoping they can set up something for us to stay over night near the hospital, such as Fisher House or Ronald McDonald. I assume that they would want him here early the next day. I am very disappointed because VP shunts are a lifelong thing to manage. It is internal however it limits certain activities, there is risk of infection and malfunction which would be an emergency. I just really want to be done with all of this. Why can't I just have a normal child where reaction to immunizations or a cold are my biggest concerns rather than will he ever fully eat like a normal child or walk. The EEG was abnormal as well; A seizure disorder was not diagnosed because the test is "normal for a child with the extent of brain injury that he has and being premature". He will not be started on seizure medications at this time. The VP shunt placement can cause seizures however not having one placed could cause further damage to the brain and no progression of development. I see all these mothers carry there babies around in just a carrier without all the gear or fears that have. I am not too Kean on him being intubated for major surgery. Will this set him back developmentally with his oral feedings and potential oxygen wean? I also question will he make it out of surgery or will God finally decide that his poor soul has served it's purpose and does not want him tortured him any longer. I don't know. He has been a blessing, his beautiful eyes, his dimples and the way he crawls on Glenn when he holds him. I hope he will come out of surgery okay however God knows what the outcome will be. Other children have under gone much riskier surgeries okay. Just when progress is being made this could potentially cause a back slide in everything since hospitalized children tend to regress a little developmentally. Sort of like an adult who does not feel well. We don't feel too good after surgery and it takes a while to fully function in our daily activities. For an infant that would be eating and learning to roll over, lift head, ect. I am waiting for traffic and the heat to calm down. For those of you outside of WA, I heard it was over 100 degrees here. I am sure those in AZ are like so, what it is not a dry heat and most people don't have AC. I figured we would leave when the sun starts to set however that makes for more than a 12 day away from home. We do have two room AC however it's not the same as central AC. We will keep you posted. Please pray that Abe will fly Thur this surgery without problems or set backs, that Glenn and I can cope with it. Glenn has been very busy at work so the timing on this is not great however the surgeon does not want to postpone. I hear that the neurosurgeons don't just do surgery to do it they really weigh benefits and risks especially in young infants. He said that he prefers not to do it however it is medically necessary at this point. The neurologist wants an MRI too. Abe is getting upset, gotta go

7/22/09

Abe's eyes are now mature. His ROP did not progress beyond stage 2 (good) however his eyes do deviate to the side. This might require surgical intervention down the road. His next appt is in November. He tracks intermittently with his eyes. The eye doctor recommended yellow toys and a light. I am using my otoscope as a light and I got a baby Einstein yellow duck. She did not recommend anything with too much color since the goal is to master fine focus and not be focusing on too much at one time. This is difficult since most baby toys have lots of color. He is 12 pounds 14 oz and 62 cm. He is taking more by breastfeeding or bottle and less by tube feeding. However his reflux is significant. I have cut caffeine out of my diet on some days however Mc Donald's has awesome sweet tea for a dollar that is hard to resist; especially on hot and sunny days. His height measurement tends to be all over the place so I question it. I read that eliminating dairy, caffeine and citrus out of the mother's diet can help a breastfed baby with reflux (GERD). I am starting with caffeine however there are so many foods that are considered "dairy" that I eat. Also calcium and vitamin D are important in prevention of osteoporosis. He was started on Prevacid 15 mg solu-tab a week ago however I have not seen much improvement so now he is also on Zantac in the evening. I would prefer that he does not need medication for GERD. I know when I was pregnant I had acid reflux and it is pretty miserable and would have to take medication for it occasionally. If this means he can stop the tube feeding that I will continue the medication. He has shown some improvement over the last day. I was very concerned about him tolerating the amount of his feeding. He is supposed to get 3 oz plus 2 cc (92 cc) every 3 hours day and night. Does anyone know of any natural ways to help babies with reflux? We have a wedge (up right position for him), I try to hold him upright while feeding and minimize movement after he eats. I am not sure what else to do. Sometimes he is fine until I put him in his wedge, when I need to pump, and he starts coughing then spits up everywhere. His sodium bicarbonate level was 26 yesterday (good). This means that his lungs are worker better and that he is not in a chronic state of respiratory acidosis (lungs not functioning properly enough to have proper exchange of oxygen and carbon dioxide). He is having an EGG tomorrow morning as part of the work up for seizure disorders. The exam in scheduled for 8:30AM. It will take 1 hour and he needs to be asleep. This might be difficult since he is use to eating at 9AM however it was the only appointment available. Please pray that he is calm or that the test does not show any evidence of a seizure disorder. Also pray that his CT scan next week does not show increased intracranial pressure or need for a VP shunt. His next appointment with pulmonary doctor is in August; please pray for oxygen wean. It will be so much easier to go places with him without the oxygen and monitor. We did go to a breastfeeding moms meeting today. It was nice to get out of the house. It was also reassuring to know that other moms have had difficulties with breastfeeding. I was concerned that I would be the only one who has to pump and use a bottle. I was the only one who had a baby with a tube feeding though. I learned some information and provided some too. I tried a Moby wrap at the meeting. This is awesome and I would recommend to all mothers especially premature babies. Provides good head support, comfortable for the mother and is recommended for premature babies. I just need to order one now. abe is hungry, gotta go.

July 11th

Abe is 12 pounds 5 oz and 26 inches long. I question the length since this would be a significant jump for him. However he appears to be growing quickly. He is Hugh compared to when he was born. Also my left elbow is hurting from holding him all the time for meals. I might have to make a doctor's appointment. I think I have tendinitis. However the medication they would probably prescribe for this might make me drowsy. I told Motrin the other day and it did make me very drowsy. His doctor is concerned about the significant increase in his head size however on the growth chart everything is straight up rather than following the normal growth curve. Therefore it is questionable if this is healthy normal growth or something to be concerned about. I had typed a long summary of what is currently going on and my computer exit out before posting. So now I will do the quicker version while he is still sleeping. He is off affine, hopefully will not need it again. Caffeine is given for apnea. He still has occasional low oxygen "desats" as low as 85% if the nasal cannula is not in his nose. He still needs the oxygen, monitor while sleeping and tube feedings. I really want to be done with all of it. He is taking more oral feeds, bottle or breastfeeding. However he is content when he takes 40cc and he is supposed to take 88 cc every 3 hours day and night. During the day I don't use the tube feeding unless absolutely necessary. Over the last week he has required the 3am tube feeding and occasionally the midnight, 6AM or 9AM. All the other feeds have been orally. I asked about discontinuing the 3am feed however his doctor is concerned about his reflux. Until he can tolerate increased volume he will continue to need the NG tube and 3AM feed. I am hoping that next month his lungs will be mature enough that he no longer needs the oxygen. He has an eye examination this week. Please pray that the ROP has not progressed and that his eyes are mature. Also pray that his reflux is less. I am wondering if his reflux is attributed to the immaturity of his esophagus, the NG tube and something in my diet that is transferred in breast milk. He pulled out this NG on Friday night and I left it out until 3:30PM on Saturday. I was going to leave it out however I worried about him not getting enough to eat and getting dehydrated. It was so hot on Saturday, his diapers were not as wet as usual and his lips were a little dry. Also his doctor wants the NG tube to remain until the reflux is less. I read in my peds book that 6 French NG tubes were not found to contribute to reflux in some studies. His reflux was less when the tube was out. We are transiting him to taking his medications orally since the new reflux medication is not compatible with NG tubes. This will be difficult since it does not dissolve that great and we can't mixed in a large amount of water. He is on 3 meds: thyroid, reflux and multiple vitamin. His doctor wants to continue with the iron because he did not get all iron stores that he would have received if he was full term. AAP (American Academy of Pediatrics) recommends that all breast feed babies get vitamin D too. So he will have to continue on his. Developmentally: he has increased head control, puts his hands in his mouth and is starting to focus more. He moves his left side more than the right side. I think he might have right sided weakness and will need glasses at a early age. he wants to eat now.

Pulmonary news

We saw the pulmonary doctor at Children's a few days ago. She was very sweet. It's always nice to have a good person working with you and your child. However I am beginning to feel that we have too many people working with us. Pulmonary, GI, endocrinology, neuro surgery, neurodevelopment at Children's and at home, OT/PT, lactation, dietitians, neurology and a pediatrician. I guess at least he does not need urology and cardiology. As he gets better and older I am hoping that the number of specialist decreases. Oh well at least we have health insurance so that he is provided the necessary care. I have had some problems getting his medication for GERD, reflux. It has been a huge hassle however I have one contact person at the Naval Hospital Pharmacy to contact about this issue now. It has to be compounded because his NG tube is a 6 french. In order to use the tablets he needs an 8 French NG tube. The pulmonary doctor thinks that he will outgrow the need for an NG tube and will never need the bigger size. He is taking a lot more by breast or bottle however his carbon dioxide level was high. The body exchanges oxygen and carbon dioxide. This is due to his chronic lung disease. Premature babies develop scar tissue in their lungs which makes breathing more difficult. We are cutting his caffeine dose 1/2 for one week then discontinuing it. Yeah one less medication to worry about. Also if he is awake and with us he can be disconnected from the monitor. In fact most parents don't keep their kids connected all the time. I did because I thought the the information could be downloaded and I wanted to show compliance. I think the equipment limits him developmentally any ways. Yesterday we met with lactation consultant and for some reason I became very emotional. I think it's because her office a few doors down from where I was triage the night I delivered. Maybe some post traumatic stress situation. Apparently she is usually called in for difficult or premature deliveries. She was not called in for my delivery and as a result all the staff now know to call her in. Oh well that can not be changed now however another premature baby could be spared the severe brain bleeding that resulted from the difficult intubation. His oxygen tank ran out and his monitor was alarming, indication that he definitely still requires oxygen. I could not find my car , went to both parking garages and was very stressed. I finally got to the car and when I switched out the oxygen tanks something was wrong with the regulator. I finally went to the ER for assistance. His color was good majority of the time however at one point he was a little gray. It felt like an idiot because I put the regulator on backwards, however I saw a baby who needed oxygen so I quickly was trying to get the equipment ready for him. Several people offered to help me however I was too over whelmed to even know how they could help me. The ER staff determined that the regulator had a leak however it was safe for me to drive home. They replaced the rubber stopper. I am a nurse so I should know how to handle this however in the hospital it's automatic. You just turn the oxygen on. During this time I was already upset with the mention of a G-tube, surgically implanted tube that delivers milk to his stomach. I don't want this. I know the NG tube contributes to his reflux and the G-tube would minimize this risk however there are other risks involved: infection, breathing difficulties from the general anesthesia and scaring if it ever removed. The mention of this made me feel like my child would be tube feeding dependent. I am determined to get him off the tube feeding. We went the whole weekend with only breast or bottle feeding. However when he was sleeping at 3AM Monday morning I decided that he works very hard to take almost 3 oz so I will give him a break. Sometimes it takes him over 1 hour to drink 3 oz. His breathing becomes labored and he gets tired. However we are working on this. Over the last couple of days he seems to struggle less with oral feeds and to be interested. The doctors expect a weight gain of 1/2 pound to 1 pound per week. Wow I might not be able to use the size 1 diapers. It has been revealed to me that God does work. One day after our first outpatient appointments the receptionist at Children's said "lady with the pony tail", (that's me, have not had my hair cut in a year now) I can help you. We got to talking and I shed a few tears. She was a premature baby herself, born 8 weeks about 50 years ago. Her mother slipped on the ice in January then went into labor. She has cerebral palsy however it's barely noticeable. She does walk a little different and has some weakness however she has worked at Children's for 24 years, her speech and vision are fine and she is a smart lady. She is also very kind and thoughtful. She found me when we came back another day and gave me a card. One word of advice she gave me is "my mother always treated me like a regular child". I find this difficult to do when he is hooked up to different pieces of equipment however every day I see more and more normal baby behavior. I am not sure if he can see but he definitely can hear. He needs to eat now. Seems like that is how we spend our time. I envy the mothers and babies who don't have this struggle.

June 29

Abraham is growing nicely, 11 pounds 11 oz today on the home scale that we borrowed. We did demand feedings over the weekend (feedings when he shows signs of being hungry). Abe had less reflex, was happy, playful and slept soundly. I was very nervous about this given the strict every 3 hour feeding schedule set by the medical professionals. Also his doctor did not discuss this with me. A friend of mine pointed out, we don't eat every 3 hours ,we eat when we are hungry so why would we push a baby with severe reflex to eat every 3 hours hours. Abe is very good at telling me, "hey mom I am hungry". His cry and actions are different. I did set my alarm the first night for 4 hours after his last feed just in case he did not remember. He woke up 20 minutes before my alarm. However I tried to give him all of his medications orally and that did not go over so well even if mixed with breast milk. I gave him his medications with his NG tube. I breastfed him last night around 11PM, he fell asleep then I gave him his vitamin with iron around midnight. At 1AM he woke up so he took a bottle. He was very fussy and vomited so we did his 3AM and 6AM feed with the tube. I was really hoping to be done with the tube feeding. I do get more sleep doing the tube feeding however it is not normal and I feel it inhibits him developmentally. I think the vitamin might have contributed to him vomiting. I am hoping that his doctor takes him off the iron based on the lab work he had last week. We met with a lactation consultant at the Navy Hospital last week. She is very nice and a Christian. The scale showed he only took 15 cc after 40 minutes of breastfeeding. He seemed happy and content and fell asleep so we feel that he took more. We are meeting with her again this week. She was a NICU nurse before so she has experience with infants like him. The home therapy professionals came today. He does qualify for services since he is developmentally delayed (on the actual age of 5 months). Adjusted age he is almost 2 months old. Please pray I am feeling a little discouraged about his head control, the ability of him to focus his eyes and his ability to eat like a regular baby. He required a tube feeding for his 3PM feed. He meets with the pulmonary doctor tomorrow. It would be so nice to take him off the caffeine, monitor and oxygen. The lactation consultant recommended one thing at a time with him so that he is not overstressed. I would love to be done with the tube feeding however I would say my first choice of less medical intervention would be the caffeine (contributes to reflex and premature babies usually do not require at this age). The next step would be the oxygen then the monitor. When he is weaning off the caffeine it would probably be a good idea to keep the oxygen going and when he finally weans off the oxygen it seems like he would still require home monitoring on the pulse ox. We received a letter about purchasing the pulse ox. I don't know how long it will be required and I don't really want to purchase it. It is medically necessary at this point therefore I don't feel like we should be forced to purchase it. Trust me it is not a luxury item. In fact it gets in the way of several things however it is for safety especially since he is on oxygen. Please also pray, the nurse practitioner that came to the house today measured his head much larger than what the naval hospital medical assistant got. This could be a sign of increased intracranial pressure therefore would require medical intervention with a shunt. I asked if I should contact neurosurgery about this and she said that it is not necessary. Unfortunately the home therapy programs support bottle feeding and not breastfeeding. Bottles are so annoying. I have pump the milk and if it is from the refrigerator I have to warm up it up while Abe is fussy, feed him then clean and sterile it. I absolutely did not want to do this because I did not want to waste money on bottles and I hate washing dishes. The bottles that were recommended to us, Dr. Brown Natural Flow, are not very cheap either. 5 bottles on Amazon were $17.00 plus tax. Babies R Us I think around $23.00. I could have used that money towards a baby toy, professional pictures of the baby, new clothes for him or milk shakes for myself. Oh well I guess it sure beats a tube down the nose. I will give an update about what pulmonary doctor says about the affine, oxygen and monitor. I think the clinic can upload the data from the pulse ox to see his trend. We did have an issue with Walgreen's Option Care, home medical equipment provider. They only give us one probe per week and some were only lasting a day. I finally had to call the on call staff member at midnight on a Saturday night indicating that the probe stopped working. They did not see it as a priority since he was not on an apnea (absence of breathing) monitor. I told her, "the doctor ordered continuous monitoring; do you really think a former premature baby should not be monitored?" We got another probe delivered the next afternoon. This really upset me because what if something happened to him. Who is liable if the doctor ordered the monitoring but the company is not providing adequate equipment. Also they are still getting paid by the insurance company for the few days he was without monitoring. Our primary care doctor called them directly and now we have enough to last until July 15Th. If this continues to be a problem then I do have the option to switch to a different DME provider. Having worked on the other side of this,(I worked for Tricare as a utilization review nurse) I am very discouraged if other beneficiaries have experienced this same issue. Given the patient is a baby I assumed they would provide adequate home medical equipment.

Our chunky baby

Abe is 11 pounds 4 oz now. His doctor commented on his double chin. He seems to be doing better than last week. We are still not sure what caused him to be unresponsive. His doctor thinks it might have been a seizure or related to excessive crying. Some kids cry so much and so hard that they pass out. She has seen this in 6 month olds. He is being referred to GI doctor (tube feeding and GERD management) and neurology (seizure work up). He is taking more by breastfeeding and bottle however he tends to spit up excessive amounts of milk after either. My milk production has slowed down, I think it's related to stress, lack of sleep and not having an opportunity to pump as much. when he was in the hospital the nurses could care for him while I pumped, now it's Glenn or me. When I asked his doctor yesterday, "should I do all bottles to get him off the tube feeding?" Her response was "no" he needs to continue to breastfeed as much as possible so that he can learn. I am so thankful that his doctor supports this. I also learned that there is a lactation consultant at Naval Hospital that is willing to assist us with breastfeeding. The therapy programs will only assist with bottle feeding infants. We met her briefly however Abe was sleeping after being poked 3 times for a blood work and then another 4 for immunizations. It might have been better to do blood work one day and immunizations another day. She set up an appointment with us for Friday. She is very nice and a former NICU nurse so she is use to dealing like Abe. The doctor cleared Abe to go to church however we ask that due to the risk of infection that people don't touch him. I know it's so tempting to touch an adorable baby however we would like him to be a little stronger. We might only go to bible school to see how he does in public. He seems to be affected by loud noises so the main church might be too much for him at this time.

Need Prayer ASAP

Abe saw neurosurgeon today. CT scan of his brain showed enlarged ventricles (not a new finding for him) which is found with hydrocephalus. He is trying to do a wait and see in on the decision to place a permanent VP shunt. Abe has been taking more oral feeds either breast feeding or bottle. Sometimes his whole amount so we can skip the tube feeding. However tonight he was awake from 2:45PM until 7:10 happy playful and even smiling. Then he took his whole 82 cc by bottle, vomited pretty much the whole amount so I bathed him. After his bath he became unresponsive. I debated if I should call 911 instead I called Glenn who was downstairs to come and let me know what him thinks. I had him off the oxygen and monitor while bathing. (oxygen was on for some of the bath). I thought his color looked a little gray, Glenn thought a little pale. His oxygen monitor showed 83-88%. I put his oxygen back on him and he still was only a little responsive even with the oxygen monitor showing 90-96%. I blew in his face and his eyes twitched a little but not as much as usual. He became himself again, crying and responsive. I called the peds on call doctor. She suggested that he goes to ER. The ER doctor felt comfortable to discharge him back home. He is fine now however we are not sure of the exact cause of this. Was it a seizure, apenic spell, fluid aspiration from the bottle feed or water from the bath or a side of effect of the Tamiflu. Tamiflu is not recommended for infants under the age of 1. He has been on this twice. Thankfully it was his last dose. He seemed to do better on it last time. However I am also on it and I am sure some of the dose is in the breast milk. I am nervous to go to sleep tonight however I have been up since 4:30AM so I know I need to sleep. Pray that he will continue to be fine, that if it was a seizure that he won't have another one and that no further brain damage occurred as a result and that all of us can get some sleep. Right now he is happy with his binky and monitor indicates 97% on his oxygen saturations (good).

June 11, 2009

Abe and I went to Seattle yesterday. We were gone for over 12 hours however all the providers allowed us to keep our appointments even with household flu exposure. It was very stressful managing all the equipment and getting the ferry. Next week we have to get the 0620 AM ferry. I did not know the whole outpatient process. You have to draw a number to even check in for appointments so we were a few minutes late despite arriving a whole hour before. I took my time, pumped in the car, talked to another NICU mom and had breakfast. Next time I will know to check in right away or at least draw a number. Glenn does not have the results of which flu he has. The flu makes you feel awful however please keep in mind that healthy adults are much more likely to recover and not have any complications. On the other hand if Abe got the flu he would be more likely to require being hospitalized or have complications. Those at greatest risk would for complications would be the very young/old, chronic health conditions such as heart problems, asthma, ect. For those people who have been around us please see the CDC (Center for Disease Control) website for more information. Not everything you read on-line is accurate however I trust the CDC website. Eye doctor: no change in eye exam. Abe was screaming when she was trying to talk to me so I don't completely understand the results. I told the nurse this so she is going to mail me a copy of the notes. OT: impressed that he is able to breast feed (she indicated that she did not think he would be able to). He took 10 cc from the breast and 30 from the bottle during the appointment. She advised pre/post breast feeding weights but questioned the accuracy of the scale we have at home. She also advised to try oral feeding bottle/breast for day time feedings, alternating between both. She felt that he is only going to come off the tube feeding if we show how much he takes with a bottle. The neurodevelopmental nurse practitioner was very sweet. Her only concern about his development: holds head to side instead of centered otherwise she felt that he acting like his adjusted age of 1 1/2 months. Dietitian wants to increase his tube feedings by 2 cc every week. Social worker: gave us information on resources. Abe went to the peds clinic at the Naval Hospital today. We finally met his primary care doctor. She is very sweet. His weight is 10 pounds 12 oz and he is 22.5 inches long. I was not impressed with one of the coreman when he was getting the flu screening. She asked me "does have any symptoms?" "No" then "he does not qualify for this". I explained the 14 weeks early and chronic lung disease and home exposure. During the process she questioned the RN's technique right in front of me. The nurse finally told her "I don't' need any more comments and I am sure the mother does not either". She also stuck her bare finger in his mouth. I promptly said let me do that. When she walked me to the breast feeding room I told her that it's not recommended to stick your bare fingers in other people's baby's mouth. She told me "I had just washed my hands". I did not say this but was thinking this "I don't care if you washed your hands in bleach, your fingers are not going in my kid's mouth". I don't even like my fingers in his mouth. They don't really even like him coming to the clinic because of the risk of infection why would I welcome germs from someone else directly in his mouth. I was going to report this on my way out however they were in a meeting. Please pray for us. Pray that we don't get the flu and pray that I will be a good mother. well I need to start his feed and take a nap.

The Flu Strikes Back

I have two home patients rather than just one. Glenn tested positive for the flu. We just don't know which strain yet. He will be living downstairs for the next 5 days. I don't think he is complaining too much. The TV and Wii are there. However it will be rough taking Abraham to Seattle for appointments, with all the equipment in the morning alone. Abraham is sneezing and has a runny nose. It was so difficult explaining everything to the peds nurse over the phone. The first explanation I got was "if the baby is not sick then there is nothing we can do". He is a bit more complex than the average 4 month old. I explained to her that he was born 14 weeks early, is on oxygen and has chronic lung disease. I was thankful when she suggested giving the message directly to the doctor. The pediatrician called me back and is recommending that we are all treated with Tamiflu. I don't have any symptoms and my immune system is pretty tough, probably from all the years I was a school nurse. In fact I have not had a cold since April 2007. The neurodevelopment clinic cancelled his appointments because of the flu exposure. He won’t be seen until July 21st now. The eye doctor and OT still want him to come. If he needs eye surgery it will have to be done before he is 52 weeks gestation so that appointment can not be postponed. Abe is over 10 pounds now and has been breast/bottle feeding in between tube feedings. He does not do so well with the bottle. It pours out too quickly for him. I have been tracking the information for the OT. They increased the amount he gets in the tube feed by 5 cc so now he gets 80 cc every 3 hours. We still have not had any home therapy. I need to call them to see what the hold up is. Please pray that his eyes have improved, that Glenn will feel better and that Abe and I won't get the flu too.

Get this feeding tube out

I have been trying to get him to breast fed. He shows signs, rooting reflex, that he wants to nurse. During the 8PM hour yesterday night he nursed twice. I did a pre/post weigh on him, pre was 9 pounds 15 oz and post 10.01. His weight on Monday with no clothes or diaper was 9 lbs 5 oz. I am trying to figure out if fluid ounces are the same a solid ounces. Glenn weighed a container of breast milk and an empty container and it showed that 1 ounce of milk equals an ounce. However I don't think he took in 3 oz in 6 minutes especially since it was not continuous for 6 minutes. The doctors prefer that he takes the tube feeding or bottle; probably because this can be measured exactly. I tried to give him the full 75 cc (2 and 1/2 oz) with the Dr. Brown natural flow bottle and he took 40 only to spit most of it up due to a burp that was stuck. He did not seem too happy with the bottle. In fact when I put him up to my shoulder to burp him he was trying to latch on it my shoulder. I have a referral to see the occupational/physical therapist/lactation consultant at Children's however that's a long ways to go. She worked with him since March so it might be worth it for her to see his progress and give suggestions. We are waiting for the home assistance with the Holly Ridge program. So far we get just home medical equipment and a phone nutritional assistance. The Navy/Marine Core nurse is coming in the morning however she is there to weigh him and probably basic newborn/baby care. The service is free and she won't be managing the tube feed or oxygen . She is a retired RN. It might be helpful it may not be. Either way it saves us a trip to the doctor for a weekly weight. Option Care did provide a baby scale for home use. Insurance does not cover the cost of the rental however Option Care indicated that they want bill for renting it. I thought we were going to get some home nursing from Option Care. I guess not, maybe because I am a nurse myself. The second time I had to replace the feeding tube in the home I cried. I did the Wii fit and was so disappointed to see my weight 2 pounds heavier than the day I delivered. I think this week it will be less because I don't get too much time to eat. Since we cancelled the remodel Glenn installed cabinets with counter top, trash compactor and a new screen door. We decided not to get the diaper genie because the trash compacter works great and will serve a dual purpose once he is out of diapers. I found a Bumbo chair on Craigs list for $25. Wow this chair is way over priced. It's $37.00 at Target. Most babies don't use it for very long however Abe will probably need one longer. I was going to buy a "Pump in Style" breast pump however Katie M. pointed out that this is for single users only. I found that the FDA does not approve this pump for multiple users, even with your tubing and other equipment because it is an open verses closed system. I cancelled the purchase. The hospital ones are closed systems. Looks like he has the "Goddard" chin. We all need some sleep.

Got Milk???

Abraham is trying to breastfeed. He is getting more successful each time however he still fusses a lot and gets frustrated. He did very well tonight. However I was advised not to adjust the amount of tube feed when he nurses so I gave him the whole 75 cc and he just puked. He breast fed for 1/2 hour. Despite throwing up he happy even though it was a little more than the average spit up. He has another doctor's appointment. I plan to mention this and get their advice. He wakes up before his tube feeds, sometimes an hour or 1 hour and 20 minutes before schedule. He has some normal newborn reflexes: startle and rooting. When I hold him upright on my chest he moves down (normal baby thing). He loves to be awake in the early morning hours and nap in the afternoon. (Mommy is not a morning person however). I am holding him right now and he is trying to turn his head around to look at the computer screen. I know that the American Academy of Pediatrics recommends no TV until age 3 due to the visional effects and link to the development of learning disorders. However I am not sure if computer counts. When I was a kid TV programs moved much slower; Now you can watch the news and read additional news plus see flashes of the upcoming program. Classroom teachers don't move as quickly around the classroom as the TV effects do. The doctor recommended at his last appointment that he is exposed to sharp lines and black and white contrast to strenghten his eye muscles. Glenn made him a cover for this wedges (a foam incline that is recommended for babies with reflux). One is a black and white checker board;the other one has checker board plus cherries. He is going to get a bath tonight. Does anyone have any advice on a baby carrier or sling that is recommended for premature babies with poor head control? We are working on head control but he has a ways to go. I want to try to put him in a carrier/sling so that around the house I just need to move the oxygen sat probe and tube feeding (if it's meal time). We spend most of our time in the bedroom since all the equipment is in there. However I need to unpack the house which makes it difficult for me to monitor him. He wants to play now.

Finally Home

I finally got to leave the hospital yesterday. They said I was too cute and healthy to stick around a hospital full of sick people, especially those with the flu. My mommy and daddy worried so much that my kitty cats would be jealous of me. Last night, Cali and Angel (my kitties) made sure that mommy woke me to feed me, also if my oxygen alarm went off they made sure to wake mommy up. They smell me and look at me but they don't hiss or harm me. If I don't show any signs of allergy or respiratory distress then we can keep the kitties. We had a few visitors last night and I wanted to show off so I pulled out my NG tube. Mommy put one back down because it was time for my 9PM feed. I had a circumcision then an eye exam all in one day, what was my mommy thinking. My eyes are still immature and the eye doctor does not have any explanation for it. My mommy had to watch whole exam and she cried. They opened my eyes with metal clips then used another metal clip to see other parts of my eyes. I have to another one. You other babies out there or so lucky that you don't have to one of these exams. My mommy is holding me and typing at the same time. I won't be at church or other places for awhile since I am on oxygen, a monitor and tube feedings. My mommy is hoping that I out grow my need for oxygen and a monitor. I hate to combine good news with bad news however this message is for Nurse Tara in Canada. I don't have direct way to contact you. Jasper , a baby that has been in the NICU at Seattle Children's for a very long time is in heaven now.

Swine flu, oh no!!!

"Abe the babe" will be going home on Thursday. The home health agency is coming tomorrow for teaching. When I got back from lunch today I noticed his room mate was gone. The resident came in to tell me that her viral screen came back positive for the H1N1 AKA "swine flu". She had to tell me this information to explain why he will he will need Tamiflu. Abraham is not showing any symptoms however he is having episodes of low oxygen, 84-87% while sleeping. The Tamiflu will be used for 10 days just because of exposure not because he has it. The resident told me that his room mate did not have any symptoms of the flu however her viral screen was positive. Oh great just when we are close to discharge his room mate had to be positive for this. Also the mom would walk into the room without washing or gelling her hands. She brought other children with her too. I let her hold some of the pictures of Abraham too. Abraham has chronic lung disease so he is more likely to develop respiratory infections and have a more difficult time recovering too. The hospital is advising that will not be bringing him to church for awhile due to the risk of infection. Unlike other babies respiratory infections can be fatal to him. Please pray that Abraham, Glenn and myself will not become ill with the flu. I have a pretty strong immune system however the stress level is high and sleep is low. I am trying to load up on vitamin C. I hope my breast milk will protect him. I forgot to see if we also need Tamiflu since she was the room mate since Saturday night. I have watched multiple family members and staff not gel in and gel out of his room. I see this because I am right by the door. He is going to have a busy day: circumcision, eye exam and car seat challenge. His low oxygen might be related to the increased feeding time (over 1/2 hour) and because of reflux or a sign of infection. I have only seen him do it a few times today however I am not sure what it related to yet. I saw the low oxygen even before I knew about his room mate's viral panel and I was already questioning infection as a cause. We have a new room mate, hopefully one that is not contagious. She is a baby too. I am not sure how old she is however the size 1 diapers are too small for her. Abraham wears size one however he is growing quickly.

Going home

Wow we are finally going home this week. The anticipated discharge day is Thursday. Glenn is getting groceries and diapers today. He will be on home tube feedings every 3 hours day and night. The hospital schedule is 3,6,9,12. The tube feeding goes over 1 hour. He will also go home on oxygen as well. I finally met with the discharge planner today. She is working on getting authorization for home nursing, home tube feeding and oxygen equipment and breast pump rental. Abraham is getting his circumcision tomorrow with one of the NICU doctors. In fact it's the doctor that admitted him. I will probably be sleep deprived at home however at least we will be at home. We still don't have our house unpacked but we will get that worked out. We appreciate all the support that was extended to us during this trying time. It is still an uphill battle but it's getting easier.

Discharge Plan

Wow it's becoming more of a reality now. He is tolerating his continuous tube feeds however has a little reflux and is growing. He is up to 8 pounds 4 ounces.What is keeping him in the hospital is the episodes of apnea (absence of breathing, low oxygen saturations on the monitor). He was put on oxygen today 0.1 and he has high oxygen levels. The attending physician spoke with me for a long time and said that he actually would be getting 25% oxygen although the concentration on the oxygen supply is 100%. I questioned him if he took time to research this. He assured me that he consulted with the pulmonary and eye doctor and they all felt this was a safe plan. I have a difficult time trusting people however if this is what he told me then I have to believe it be the truth. If he has episodes apnea that he self recovers from and has less of them then he will be discharged home. I am meeting with the care the coordinator tomorrow to figure out the discharge plan. I will need the breast pump longer than June however I am not sure if Tricare will cover this. It seems like it would be less expensive than specialized formula.

Medical Unit Life

Abe has been on the medical unit since Thursday. It has been a very stressful transition. Some things that he made it stressful include new doctors and nurses, I stayed one night at his bedside and did not sleep, the whole high oxygen concentration and the immaturity of his eyes and the breast milk policy. The policy changed on breast milk storage from 48 hours to 5 days in the refrigator if fresh pumped. The policy changed in March however the nurses on the regular units deal with all ages, newborn to age 21. The nurses here were putting all the milk in the freezer. Freezing breast milk destroys the white blood cells. Fresh milk is better for him because if there is virus or illness going around the hospital the mother will develop protective antibodies against it and pass it on to the baby. Also fresh milk is easier to work with, no need to wait for de-frozed milk to be ready for use. They put him on "medical air" at 21% oxygen concentration which is air flow up his nose with oxygen prongs however he still is having episodes of low oxygen. The nurses rush in and put him on blow by oxygen and leave the room. I ended up yelling at the nurse today because I found him on blow by oxygen and his monitor showed 100%. He is awake now so I am going to hold him.

First day out of NICU

I did not sleep at all last night. Abe let out little cries and his alarm went off all night long. Also the sister of his room mate cried. I don't feel as comfortable pumping at his bedside either. We are by the door near the unit clerk's desk. The other patient's mother, father and baby sister stayed with him. I talked to his family. He is a former premature baby, 25 weeks gestation and he had the brain bleeds. He is 4 and has CP. He can crawl, speak a little bit and eat however he has developmental delays. When I see him I think of how Abe will be at that age. It breaks my heart. This boy interacts with his world so hopefully Abe will too. If he is similar we are going to have to be very patient as a child with special needs will require extra time and care. I did get a little sleep at the Fisher House however not an adequate amount. I am so emotional now because of lack of sleep. I am also concerned about his eyes. A nurse's aide gave him an oxygen blast when she saw him at 87%. I told her that this is normal for him. I am concerned that nurses will give him high oxygen levels even though this is bad on his eyes. All they see is a baby who needs more oxygen. We did move his "low oxygen requirement sign". He has been off the oxygen for 2 days now. I am feeling very guilty about leaving him tonight but I am too emotional to stay tonight. Glenn is much better however he is not healthy enough to visit.

NICU Graduation

We are on the medical unit now. No more NICU for us. It seems so weird to be able to eat next to him and not have to check at the desk every time I come back. The NICU required that the clerks ask the nurses if you could go back to see your child. Now I just walk right in. Well after geling my hands with purell. He is having episodes of low oxygen level however he always did this in the NICU. I am going to head back to his room now. The nurses and doctors are getting to know him. I think the lights and the other patient's TV was bothering him. Glenn is feeling much better.

No more oxygen

Abraham's eyes are still immature which means that he is at risk for ROP if he is on high levels of oxygen and his blood oxygen level is high. His next check is in 3 weeks. The medical unit can only deliver 100% oxygen concentration with variable flow. He really does not need to stay in NICU for 3 more weeks. The respiratory therapist came up with the idea to give him 0.1 liters of 100% oxygen (was on 1/2 to 1 liter over the last few weeks on 21(room air)-40%). The floor nurses can only change the flow not the concentration. Today they put on 0.1 liters with 100% oxygen concentration, his oxygen level was too high (could hurt his eyes) so they took oxygen off him completely He even did binky training without oxygen. I was very nervous to leave him on no oxygen at all, in fact the nasal prongs (delivers oxygen in the nose) fell on the ground so I threw it away. The nurse got a new one however she did not open the package. This could be a sign that he won't need oxygen at all. This would be one less thing to worry about. There are other babies in NICU for 8 months that had to have trachea tubes placed due to breathing difficulties. Abraham appears to not need assistance with breathing. He is still on NG tube feedings, 23 cc per hour (up a little). He is coughing and showing signs of reflux. I heard this is normal for all babies however he has it frequently. This does cause him to have some breathign difficulties however this would probably be the same for anyone. Since his feeding is by NG tube he can not control how much is in his stomach at one time. He has had some serious gas too. One thing I am concerned about is he keeps his legs tucked closely to him which could be an early sign of cerebral palsy. It's still too early to tell. He passed his hearing screen. Yesterday 5/5/09 (original due date) he got to try to breast feed. He breathed well but forgot to swallow everything. The OT took a picture of us and gave me a copy. He looks like a normal baby. He seems to look like me, not sure if that is good or bad. He still a way to go before being discharged home however is closer than he was 2 weeks ago. On a different note Glenn is feeling better since he was on antibiotics for bronchitis. He doe not have the flu.

5/2/09

Abraham had a spa night tonight. That's right complete with bubbles and lotion massage. The nurse connected a tube to the oxygen hook up and placed it in the water. He loved it. It seemed so weird for him not to be connected to all the monitors. I felt like something was wrong. I was so nervous and was constantly watching him for color changes and signs and symptoms of respiratory distress. He did not show any major signs however I think his oxygen level went a little low however he recovered back. quickly. I guess it's because he usually is connected all the time and most of my experience with babies is when they are in the hospital. He does not have very good head control however I don't think healthy full term babies do either. It's difficult for me to know normal for abnormal because I have always worked with ill children. Ill children tend to regress back in developmental stage a little bit. He is strong though, he pulls out his feeding tubes and oxygen and moves his head from side to side. The nurses are actually paying attention to when his oxygen level is too high, (this can cause the ROP and lead to blindness), since oxygen requirements and immaturity of his eyes are what is causing him to remain in the NICU. I find this very interesting that they are willing to be bothered by this now and not before. I have been telling each nurse daily for over a month, his oxygen level is too high and he already has stage 2 ROP. I even told a resident and charge nurse a few days back and the day nurse today changed the settings. This means that if his oxygen level is high, greater than 96% it will alarm to notify the nurse to that the F102 (oxygen concentation) can be turned down. Yes it's very annoying to be bothered when a baby has high oxygen levels however the nurses that have cared for him won't be taking him home and dealing with life long disabilities such as blindness. A few understand this however until they are faced personally with this issue I don't think some of them will ever get the point. Don't' get me wrong he has had some wonderful care from nurses, respiratory therapist, social workers, doctors and child life therapist. Working in the NICU must be a difficult thing to do however a great staff member listens to the parent's concerns and considers their imput. This might sound weird but when I washed his clothes tonight I saw my first poop stain. For the longest time he was in just a diaper with no clothes. I thought the warm water would have got the stain out. I plan to use Oxy Clean on it later when we are at home. Oxy Clean worked great on Glenn's white t-shirt that turned black when he wore down to the boat in San Diego when he was called in late at night. He is still very sick. I did my best, by phone, to determine if he needed to be seen by a doctor. He is doing a little better but he describes it as the "worse cold I have ever had". Some friends brought him some soup. Thank you so much. I feel torn that I can't be there to take care of Glenn however Abraham needs me to stay healthy since I am his food source. I got concerned about the Flu since Washington State might have been exposed. I have not kept up with the news about actual confirmed cases. This week I went to a mom's group at a church in Bothel and had dinner with ladies from my home church in Bremerton. Thanks for letting me come to the moms group. Also thanks for coming from the other side of the water to visit Abe and have dinner. It was fun. It still makes me smile to hear about Katie's youngest child flushing the toliet and watching the toliet paper go down. That is so cute.

4/30/09

Abraham has made progress this week. His weight is up and down but he fits newborn clothes and looks healthier. He is still on continuous NG tube feeding 21 cc hour however he is doing better with Binky training if he stays awake long enough. He is crying less when he sleeps too. I think the reflux was really bothering him however he is on medication for this. This thyroid level is in normal range and he is a little bigger and older so temperature control should be stable. There is a NICU term "little wimpy white boys". Apparently premature boys of Caucasian decent are typically in the NICU longer than girls or boys of other ethnicity. Not sure why however nurses that have been NICU nurses for 30 years see this trend frequently. He is almost all long as the isolette mattress so it's time for a "big boy crib". He kicks his blankets off and they find his feet at the end of the isolette. He is going to be a very active, busy little boy. He tries to seek out the breast however gets frustrated because he is not able to eat this way. However his nurse today felt that this was a good sign that he might breast feed in the future. She recommended more practice. She also told me to go to You tube and search NICU cribs. Ther eis a funny video about the isolette. While at that website I also found: http://www.marchofdimes.com/prematurity/21295_10699.asp. I think my sister told me about this before however my brain was on overload. He had an episode of low oxygen, in the 40s and turned gray when he fell asleep in my arms. This was scary and she had to turn his oxygen way up to 60%. He recovered quickly however he still requires medical intervention. I am so nervous about him being transferred to the medical unit because the nurses have 3-4 patients at one time. He is not ready yet but is getting one step closer. He will will in an open crib when I come back in the morning. His next eye exam in next week. Please pray that his ROP has not progressed. I met a nursing instructor from Seattle Pacific University on the elevator. She asked me some questions about the picture on my parent badge (Abe's picture) and I told her about him and how difficult it was because I know too much because I was a nurse with a master's degree. I also told her that I considered nursing education. She had me speak to her students during their lunch meeting. I was able to maintain a professional demeanor and not get emotional while discussing my experience of having a premature baby in the NICU. In other situations I get very emotional or influence other people to cry. After her students left she told me that I would be an excellent nursing instructor. She is a clinical instructor and a nurse practitioner. She went to UW like I did. In the future I do see myself seeking an educator role however right now I feel that my family especially Abraham needs my undivided attention. Glenn is very ill. He sounds awful when we talk on the phone. He is not sleeping because of coughing and congestion. He also has a fever and body aches too. He is not one to ask for help either however I arranged from someone from church to bring him some juice and soup. I don't think there is a lot of food in the house in Bremerton. If I was home I would take care of him but I can't be there. The nurses are advising me to take care of myself and stay healthy so I can take care of Abraham. Glenn will be staying in Bremerton this weekend. Hopefully he will be well next weekend so that he can come back to Seattle. Please pray for Glenn, my sisters, one had surgery and one lost her job. From what I heard from some travel nurses in the NICU nurses are having difficulties finding jobs in Washington.

When will this be over?

I have had a very difficult time emotionally lately. I hear others say how strong I am yet I don't feel that way.I am running low on coping skills. I even yelled at a nurse tonight. Over the last several days he has had many different nurses that have never had him before. This is frustrating since I asked for primary nurses. He had a consistent nurse on night shift however she moved back to Canada to be closer to her family. The mother is his old room mate liked her too. I have dinner with the other mother. She is very strong from what I see. She even lost one of her twin boys. I never see her cry or get angry at the staff. It might be a cultural thing too. He had a nice day shift nurse yesterday and today. His nurse today can not primary since she only works one day a week. She is a mother of 4 children. They attempted to lower his oxygen flow from 3 quarters of a liter to 1/2 liter. He did not tolerate this too well so they put him back up. Also he went from being on 21% oxygen (room air with air flow) to requiring up to 40%. His eyes are still immature so he is still at risk for blindness. He was started on medication for gastric reflux which seems to be helping a little bit however he is still having symptoms. His feeds are continuous still rather than bolus feeds (more like regular eating, every 3 hours). He had a bladder/kidney scan, VCUG, which showed no evidence of kidney reflux (urine back flowing into the kidneys. One thing that is frustrating is I am there every single day and I had no idea that he was started on antibiotics as a precaution on Saturday for potential kidney problems. Glenn does not remember being told this either. I knew from the prenatal ultrasound that his kidney was enlarged. I also did not know he was having a VCGU until the transport team showed up to take him there. The nurse did not think that I could go with him however I insisted and was able to stay with him the whole time and talk to him. The procedure involves inserting a catheter into the penis and filling the bladder with dye then checking on the computer screen when he voids if the urine refluxes back into the kidneys. Thankfully his scan showed no evidence of kidney reflux. Kidney reflux can put at an increase risk for bladder/kidney infections and difficulties. There are many people in my family with kidney problems including myself. He is still getting bigger. He grabbed his pacifier yesterday and took it out of his mouth all by himself. It was very cute. He also gets out of his blanket and gets down the end of the isolette. He has been sleeping during the day and awake at night. We are going to work on getting him turned around. My friend that is due May 8th, 3 days after my due date, might have to have a c-section this Friday because the baby is breech. Please pray that the baby will turn around as she wants an all natural labor and delivery. It feels weird that my due date is 1 week from now however my baby was born 12 weeks ago. I actually thought he would be late and be born on Mother's Day. Oh well there is some reason why he came so early. I heard in a song today that reason(s) why we go thru stressful, difficult and painful stuff is not always revealed until you have lived thru it. I am learning to be more assertive in this however I don't want to be too pushy. It think it was "Cowgirls Don't Cry". This song encouraged me to be strong however I also know that holding in emotions all the time is not good on your health. It can cause high blood pressure, ulcers and other problems. At the same time there is appropriate time, place and way to let the emotions out.I miss the people and sunshine in San Diego.